Commentary

You can't help but notice that April is Autism Awareness Month. We're urged by Autism Speaks to “light it up blue” in support. My Facebook and email accounts are flooded with posts and memes calling for not only awareness, but acceptance. “Always Unique Totally Intelligent Sometimes Mysterious,” reads one, set against a beautiful rainbow of color. “Autism is not a tragedy. Ignorance is a tragedy,” reads another. “Autism: Being different can be a good thing!” Maybe my favorite is “Autism is not a processing error. It's a different operating system!”

Of course, I agree with the sentiments. Awareness and more acceptance for those on the spectrum are, undoubtedly, a good thing. Certainly could have helped our family on public outings when Reilly was younger! How many times did I fail to anticipate or head off the thing that caused a meltdown in public? Probably as many times as I succeeded, but I only remember the times I failed. And, every time, I left the scene angry—at my kid, at the glowering (judging) member of the public, at myself for failing. Some acceptance and empathy would have gone a long way in those days. To be sure, we still have the occasional public “scenes,” though they are fewer and farther between.

Personal acceptance is important, too. It's what I've had to work on forever. I have said that God gave me kids to teach me patience, and I'm not learning it fast enough! I tend to be a fixer, and get easily frustrated when I can't. And I have a tendency to attribute a situation or problem to Reilly's disability, when it's really fairly normal for his age, or his gender. Friends call me on that one all the time, giving me a much-needed reality check.

The sentiment I see on social media that I do have trouble with, though, is the one that says, “My child has autism, and I wouldn't change him/her for the world!” That one makes me cranky. It takes acceptance to a new level. Of course, I adore my son, though I could live with fewer challenges, for him and for our family. Would I prefer that he be “neurotypical”? Definitely, although to be sure, I would miss some of his quirks. I love and accept him the way he is (most of the time), but if I could change him, I would.

Yet, I'm still learning the patience lesson, over and over again. Reilly is growing and maturing in ways I couldn't have foreseen a few years ago. He might not be doing it on my schedule, but he's getting there. His journey to independence is harder than I would wish for him, but he's making progress. He has a girlfriend—yay/yikes! He's taking a college-credit course, and texted me that he got a B- on the midterm. He was ecstatic, and we cheered! He's talking about taking driver's ed. Again, yay/yikes! And there's thepreviously reported summer job that he got on his own.

So maybe, we should treat people on the autism spectrum the way we do everyone else. They have strengths and weaknesses. We celebrate their strengths and try to help them with their weaknesses.

And when I'm frustrated, maybe I can remember, in the words of another popular meme making the rounds: “My kid is au-some!”

I received an email from Cameron’s employment support specialist this week. She was doing her quarterly check-in with Cameron’s manager at work to see how things were going. The only issue brought to her attention was the fact that Cameron drinks a significant amount of soda on the job, and his manager is concerned that it is contributing to his hyperactivity.

Now first of all, let me just say, yay for Cameron’s manager in caring enough to bring this to the attention of Cameron’s employment specialist. It is not the first time he has expressed concern with Cameron’s on the job consumption of calories. This time around, the service provider suggested that I ask his manager to limit the amount of soda Cameron is allowed to have while at work.

I know Cameron’s manager and adult service provider have Cameron’s best interests at heart, but really?Is this the biggest concern his manager has with Cameron? And is imposing a limit on the amount of soda Cameron is allowed at work the appropriate response? I would be much more interested in knowing what type of behavior his manager is seeing that leads him to believe soda is the culprit. Perhaps the behavior is something that can be brought to Cameron’s attention, and Cameron will then realize the consequences of drinking soda. I am trying my best to prepare Cameron for adulthood and eventual independence. I am NOT a proponent of soda. We don’t have it in the house, and Cameron has been put on notice by me about limiting his consumption when he’s out on his own. Having enforced limits on what he can eat and drink “while he’s under my roof” will not help him when he’s on his own and no one is there to play the role of enforcer. Cameron needs to start making the right decisions without being told what the right decision is. I’ve been pointing him down the path toward the right decisions for 18 years. It’s time he start making them.

Another example of making the right decision would be his morning routine. He rarely allows himself enough time to get through his morning routine before the bus arrives. And the last item in his routine is brushing his teeth. I thought I had helped solve this problem by telling him to put toothpaste and a toothbrush in his backpack, and brush at school. I assumed he had been doing that with regularity. And then I happen to ask him if he needed another travel-sized toothpaste one day.

“Well, I haven’t been brushing my teeth at school lately because my toothbrush got this black stuff all over it. But I brush my teeth for four minutes before bed.”

And guess who just had two cavities filled after years of perfect dental exams? Since I’ve been able to blame the cavities on the lack of brushing and the soda drinking, maybe he has learned his lesson. I’m not suggesting I would let his teeth rot to prove the consequences of his actions. But, sometimes consequences are better than Mom always enforcing the rules.

It seems as though we will never be able to navigate the red tape maze which the state creates for those who need services. As of now, we have Cody’s caseworker calling me and asking me if he has been enrolled in his new program, and I have the program directors calling me and asking if he has been approved for enrollment. No one has told me anything one way or the other. And apparently, not only are the agencies not communicating with me, they are also not communicating with each other. This seems a less than optimal example of our hard-earned tax dollars at work!

Several weeks ago I had faxed paperwork from the new program for Cody’s primary care physician to fill out. It was a simple form asking for details regarding Cody’s last annual physical. I signed the consent forms and asked Cody’s doctor to please fill in answers to the questions and then fax or send the form to the new program director. But did that happen? Of course not. Roughly a week went by and I received copies of the form in the mail from Cody’s doctor’s office. Silly me. I thought that surely these were just copies for my records and they had also faxed or sent copies to the program director. However, I decided to call the program director and make sure. She hadn’t received anything from Cody’s doctor. So I faxed the records to her.

One might have thought this would be sufficient. But then I found out Cody had to have a current negative reading for tuberculosis (TB) which was not included. There was one more trip to the doctor’s office. But that I could understand. TB can be a deadly disease and it is more prevalent than many people think. So I wasn’t willing to put my son or anyone else at risk.

However, I was a bit taken aback when they also asked for vaccination records. Cody is nearly 27 years old. Some of his shots were given by his pediatrician. Some were given at school. And some were given through the county health department. And all of them were administered years ago.

Cody completed all of preschool, elementary, middle school and high school through the public school system. All public schools in Missouri require parents of students to provide vaccination records before the enrollment process can be completed. Does it not make sense to the state that Cody’s had all of his vaccinations?

I was able to get a copy of Cody’s vaccination record from his pediatrician’s office, but that only includes the shots he had during the years I took him to that particular doctor and the ones just prior. Will I have to call each of the other agencies to get copies of the shots they gave him? How long will that take?

When I worked for agencies which fell under the state’s jurisdiction, I was required to have a TB test but I didn’t have to provide my vaccination records. Does this program also require staff members to provide records of their vaccinations? They could be carriers of any of those diseases just as easily as any of those who are the recipients of their services. After all, these are not young children who are enrolled in this program. They are adults as well.

When I did receive a call from Cody’s caseworker last week she also told me that in spite of all of the information I have provided she still has not heard of any decision as to whether or not Cody has been approved for the speech evaluation and therapy sessions we have requested. So the waiting game goes on there as well.

I feel as though I have been asked to do everything just short of performing the 10 basic moves of ballet and it has gotten us nowhere. I only pray it doesn’t take an act of Congress. I would be glad to give them a dance recital if that is what they wished, but we all know Congress ceased to act on anything long ago.

It’s true, last week’s visit with my family was filled with moments of connection and terms of endearment ... but that’s not the whole story. (Is it ever?)

On Friday, we did a walking tour of our town. Together, we strolled for two hours in the morning sunshine, then stopped to eat at a favorite local coffee shop. We arrived during the lunch rush, and while I savored the energy of the place, I knew Willie might have trouble with the noise level. No matter, I thought, he has his noise-canceling headphones. But unfortunately, he’d forgotten to bring his headphones along for our walk.

Our parents exchanged glances and watched Willie closely. At first, everything seemed fine, but just as I was finishing my salad, things took a turn. Mom asked Willie a question, and rather than reply in words, he let out a sound between a shriek and a bark. (Translation: The noise level is really getting to me.) I grabbed my purse and gently prompted Willie toward the door while everyone else gathered their things. As we stepped onto the sidewalk, Willie looked better immediately, and seemed to regain his equanimity. Even so, I was on edge. The visit had been going so well. I’d been lulled into forgetting about challenging behaviors, but there on the sidewalk, I remembered.

In the afternoon, we walked for another hour through a neighborhood of historic homes. Willie repeated the same questions; we tried to help, but I could tell he wasn’t doing well. And then, as we came to a crossroads, he lost it. He kicked a nearby tree, bit his shoulder, and tried to strike both our parents. (Fortunately, he didn’t succeed.) Our parents handled it, and no one was hurt.

My husband held my hand; together, we waited it out. It was hard to stay present—everything in me wanted to run away—but even so, I gave it my best shot. (After all, if I expect Willie to maintain calm behavior, the least I can do is attempt the same.) I reminded myself to breathe, to hold on to that which I know is true. Yet I also felt myself numbing out, trying to avoid feeling the grief, frustration, and yes, embarrassment (we were in the middle of a residential neighborhood at the time, with pedestrians nearby).

Afterward, I felt shaky. My mind whirred, trying to think of ways in which the meltdown could have been prevented. What if Willie had had his headphones at lunch, in the noisy cafe? What if we’d chosen to rest instead of going for another walk? But I heard a dear friend’s voice in my mind; I remembered her telling me, “It’s not your fault,” when it came to Willie’s meltdowns. I held to that, and was able to forgive Willie before he apologized.

When we arrived home, he sat on our front porch and wept; we brought out the tissues and water bottles. Our neighbors’ wind chimes rang; it was a beautiful afternoon, and that helped wash away the ugliness of the meltdown. After a time, I could tell that the storm had passed.

That evening, we met for supper at a restaurant downtown. Willie had his headphones on, and we shared a delicious meal. But then, as our plates were cleared away, I saw silent tears running down my brother’s cheeks. The sight took me entirely by surprise. “Willie, honey, what is it? What’s wrong?” I exclaimed, kneeling by his chair and putting my arm around him.

“I kicked the trees,” he said, his voice mournful. He always weeps right after a meltdown, but to see him crying hours later was unusual. And even at the time, I was impressed by what a clear, direct statement he’d made, how he’d effectively summed up the reason for his sadness. I noticed, and was proud of him.

“It’s OK, Willie,” I said, and meant it. I lay my head on his shoulder; he put his head gently on top of mine. Conscious of his need for space, I pulled away after a moment, but he kept his head bent toward me; a rare gesture, as though he wanted to stay close.

I recently returned from a three-day business trip with my father, who works selling car belts and hoses. He often asks me to help him with certain tasks relating to his job, and I am more than happy to give him assistance if I have time. Sometimes this means I go with him on trips to see some of his customers. This particular work trip was the longest I have ever taken with him, and even though the work was long and could be somewhat dirty, I was glad I could help my father.

The type of work we did in all of the stores mainly involved changing all of the cardboard sleeves on the belts. In addition, we took inventories of and rearranged the belts and hoses so the stores’ personnel could easily find needed parts. I feel my autistic mind is well-suited for these types of jobs because they involve keeping track of details, which is something that I find easy to do. For instance, when I was changing the belt sleeves, I had to make sure the numbers on the old and new sleeves matched and the belt fit snugly enough in the sleeve so that it would hang on the rack without falling off and would not touch the other belts, giving the whole rack a professional-looking appearance. Back in the hotel room, I put labels on the tags that came with some of the belts and hoses, sticking the labels on in just the right way so that the whole line appeared uniform.

I also enjoyed meeting new people at the stores and having conversations with some of the friendlier employees. I sometimes find that I do not want to talk to other people because I am intimidated by them. Other times, I try to start a conversation because I want to “break the ice” between us, but the other person does not respond. It was this latter reason that compelled me to make small talk with some of the other employees. I was surprised when they spoke back to me, and soon, we were talking about some fun topics as if we had known each other for a long time.

One thing that did irritate me, though, was the pain that kept shooting through my feet during the second and third days. I am not used to doing this type of physical work and standing on the hard floors all day really affected me. I worked through the pain because I wanted to finish my part of the work, but it made me long for the soft, soothing carpets of the hotel room.

After the work was done, I got a few compliments from some of the store employees for being a hard worker and being a good help to my dad. That praise was worth all of the labor I had put in and my achy feet, but there is something else I have come to value even more. I have gained an even greater appreciation of what my dad has to do day in and day out. It has given me an understanding of how hard he works to support our family. The pain I felt during the trip was, thankfully, temporary, but my father physically works like this every day. He does a good job regardless of what he has to do, and that dedication to his work is a virtue I would like to emulate with my own work as a writer. Being a writer brings a lot less physical pain, but it takes just as much dedication to produce a good piece of writing. Any kind of work can be worth it if you put some good effort into it, so I’ll keep doing my part to make sure that happens for me, my family, and everyone else who benefits from what I do.

My 20-year-old son Mickey sits cross-legged on the bench in the neurologist’s office. A teenage girl and her mother sit catty-corner. I see the girl’s eyes widen, and she smiles at him. She’s eyeing him as if she thinks he’s cute. Can she possibly be—flirting?

Mickey doesn’t look at her. Instead, he opens an oversized workbook called “Social Skills Activities for Special Children.” It’s left over from sixth grade, but he still loves it. He reads aloud, laughing a little too loudly. The girl glances at her mother: the look they exchange is unmistakable. I can practically see a cartoon thought bubble forming above her head:

What’s wrong with him?

The girl’s flirtatious smile fades to pity.

A nurse appears. Mickey covers his ears. He crouches like a school kid in a duck-and-cover drill. “Don’t say my name!” He’s afraid the nurse is about to call him; he’s been fretting about this for weeks. He’s not happy being here. He hates having to have yet another EEG. I’ve promised over and over they won’t call his name. As soon as we checked in I made sure to tell the receptionist.

The girl whispers something to her mother. I wonder why she’s here. This isn’t an ordinary waiting room. She’s not here for a flu shot. This is the Epilepsy Center. There are children here wearing seizure helmets.

Mickey laughs to himself again. The girl darts sidewise glances. Then from across the room, I hear a man’s irate and sibilant hiss. “Shush!”

Even here?

I bristle. Yes, Mickey is too loud. Sometimes he has trouble modulating his volume.

“Mick?”

“Yeah, Mom?”

“Quiet voice, please.” I pat the air in that downward motion that signals him to speak more softly.

Welcome to Autism Awareness Month.

Yes, it’s April again, that cruelest month. The one where everyone talks a good game about Autism Awareness.

But what I’m most acutely aware of today is how people look at him. Still. After all those blue light bulbs and puzzle piece car magnets and T-shirts and rubber bracelets. I’m painfully aware of the stares. And the trying-not-to stares. I don’t know if Mickey notices, but I do. The way they look at my son. It pierces my armor, slicing straight to the heart.

Maybe they’re just staring because people do that. Anything out of the ordinary catches the eye; it’s a primitive itch. Twenty years ago, I might have looked too.

I don’t want to care so much that they stare.

But I do.

I’m the one who always tells other parents to ignore the stares. Who cares what strangers think? I say.

But I lie. It still makes me shrivel.

On a good day I tell myself that those stares are actually ones of understanding and support. Other days, the looks feel accusatory: Why can’t you just control him?

But what cuts the most is the welling up with tears, there-but-for-the-grace-of God-go-I Tragedy Look.

Because here’s what those people aren’t seeing. Mickey’s sweetness. His sideways hugs. His silly sense of humor. The joyful way he confides, “I have delicious news.” How fiercely I love him.

So here we are again, back at April and Autism Awareness Month. In yet another doctor’s waiting room. If I were a bigger person maybe I’d view this as a teachable moment; start a conversation about autism.

Instead, I wait quietly for Mickey’s name to be not-called. Silently, the nurse appears and gestures; we stand. “Come, honey,” I say. “It’s your turn,” and we traipse past the staring girl, and her mother, and the man who hissed at my son.

I’m tired of wearing ribbons. Awareness? We’ve been working at that for years. What about acceptance?

My 20-year-old son Mickey sits cross-legged on the bench in the neurologist’s office. A teenage girl and her mother sit catty-corner. I see the girl’s eyes widen, and she smiles at him. She’s eyeing him as if she thinks he’s cute. Can she possibly be—flirting?

Mickey doesn’t look at her. Instead, he opens an oversized workbook called “Social Skills Activities for Special Children.” It’s left over from sixth grade, but he still loves it. He reads aloud, laughing a little too loudly. The girl glances at her mother: the look they exchange is unmistakable. I can practically see a cartoon thought bubble forming above her head:

What’s wrong with him?

The girl’s flirtatious smile fades to pity.

A nurse appears. Mickey covers his ears. He crouches like a school kid in a duck-and-cover drill. “Don’t say my name!” He’s afraid the nurse is about to call him; he’s been fretting about this for weeks. He’s not happy being here. He hates having to have yet another EEG. I’ve promised over and over they won’t call his name. As soon as we checked in I made sure to tell the receptionist.

The girl whispers something to her mother. I wonder why she’s here. This isn’t an ordinary waiting room. She’s not here for a flu shot. This is the Epilepsy Center. There are children here wearing seizure helmets.

Mickey laughs to himself again. The girl darts sidewise glances. Then from across the room, I hear a man’s irate and sibilant hiss. “Shush!”

Even here?

I bristle. Yes, Mickey is too loud. Sometimes he has trouble modulating his volume.

“Mick?”

“Yeah, Mom?”

“Quiet voice, please.” I pat the air in that downward motion that signals him to speak more softly.

Welcome to Autism Awareness Month.

Yes, it’s April again, that cruelest month. The one where everyone talks a good game about Autism Awareness.

But what I’m most acutely aware of today is how people look at him. Still. After all those blue light bulbs and puzzle piece car magnets and T-shirts and rubber bracelets. I’m painfully aware of the stares. And the trying-not-to stares. I don’t know if Mickey notices, but I do. The way they look at my son. It pierces my armor, slicing straight to the heart.

Maybe they’re just staring because people do that. Anything out of the ordinary catches the eye; it’s a primitive itch. Twenty years ago, I might have looked too.

I don’t want to care so much that they stare.

But I do.

I’m the one who always tells other parents to ignore the stares. Who cares what strangers think? I say.

But I lie. It still makes me shrivel.

On a good day I tell myself that those stares are actually ones of understanding and support. Other days, the looks feel accusatory: Why can’t you just control him?

But what cuts the most is the welling up with tears, there-but-for-the-grace-of God-go-I Tragedy Look.

Because here’s what those people aren’t seeing. Mickey’s sweetness. His sideways hugs. His silly sense of humor. The joyful way he confides, “I have delicious news.” How fiercely I love him.

So here we are again, back at April and Autism Awareness Month. In yet another doctor’s waiting room. If I were a bigger person maybe I’d view this as a teachable moment; start a conversation about autism.

Instead, I wait quietly for Mickey’s name to be not-called. Silently, the nurse appears and gestures; we stand. “Come, honey,” I say. “It’s your turn,” and we traipse past the staring girl, and her mother, and the man who hissed at my son.

I’m tired of wearing ribbons. Awareness? We’ve been working at that for years. What about acceptance?

My 20-year-old son Mickey sits cross-legged on the bench in the neurologist’s office. A teenage girl and her mother sit catty-corner. I see the girl’s eyes widen, and she smiles at him. She’s eyeing him as if she thinks he’s cute. Can she possibly be—flirting?

Mickey doesn’t look at her. Instead, he opens an oversized workbook called “Social Skills Activities for Special Children.” It’s left over from sixth grade, but he still loves it. He reads aloud, laughing a little too loudly. The girl glances at her mother: the look they exchange is unmistakable. I can practically see a cartoon thought bubble forming above her head:

What’s wrong with him?

The girl’s flirtatious smile fades to pity.

A nurse appears. Mickey covers his ears. He crouches like a school kid in a duck-and-cover drill. “Don’t say my name!” He’s afraid the nurse is about to call him; he’s been fretting about this for weeks. He’s not happy being here. He hates having to have yet another EEG. I’ve promised over and over they won’t call his name. As soon as we checked in I made sure to tell the receptionist.

The girl whispers something to her mother. I wonder why she’s here. This isn’t an ordinary waiting room. She’s not here for a flu shot. This is the Epilepsy Center. There are children here wearing seizure helmets.

Mickey laughs to himself again. The girl darts sidewise glances. Then from across the room, I hear a man’s irate and sibilant hiss. “Shush!”

Even here?

I bristle. Yes, Mickey is too loud. Sometimes he has trouble modulating his volume.

“Mick?”

“Yeah, Mom?”

“Quiet voice, please.” I pat the air in that downward motion that signals him to speak more softly.

Welcome to Autism Awareness Month.

Yes, it’s April again, that cruelest month. The one where everyone talks a good game about Autism Awareness.

But what I’m most acutely aware of today is how people look at him. Still. After all those blue light bulbs and puzzle piece car magnets and T-shirts and rubber bracelets. I’m painfully aware of the stares. And the trying-not-to stares. I don’t know if Mickey notices, but I do. The way they look at my son. It pierces my armor, slicing straight to the heart.

Maybe they’re just staring because people do that. Anything out of the ordinary catches the eye; it’s a primitive itch. Twenty years ago, I might have looked too.

I don’t want to care so much that they stare.

But I do.

I’m the one who always tells other parents to ignore the stares. Who cares what strangers think? I say.

But I lie. It still makes me shrivel.

On a good day I tell myself that those stares are actually ones of understanding and support. Other days, the looks feel accusatory: Why can’t you just control him?

But what cuts the most is the welling up with tears, there-but-for-the-grace-of God-go-I Tragedy Look.

Because here’s what those people aren’t seeing. Mickey’s sweetness. His sideways hugs. His silly sense of humor. The joyful way he confides, “I have delicious news.” How fiercely I love him.

So here we are again, back at April and Autism Awareness Month. In yet another doctor’s waiting room. If I were a bigger person maybe I’d view this as a teachable moment; start a conversation about autism.

Instead, I wait quietly for Mickey’s name to be not-called. Silently, the nurse appears and gestures; we stand. “Come, honey,” I say. “It’s your turn,” and we traipse past the staring girl, and her mother, and the man who hissed at my son.

I’m tired of wearing ribbons. Awareness? We’ve been working at that for years. What about acceptance?

Hurray for having an 18-year old-son! At least that’s what I keep trying to tell myself. Even though Cameron is very different from many 18-year-olds, I am making a concerted effort to treat him like an 18- year-old … whenever feasible.

Last weekend was a prime example of my having to make a conscious decision to let Cameron be 18. Cameron went to see an R-rated movie, and it wasn’t rated R for violence or language, if you get my drift. But that’s what 18-year-old boys do, right? He purchased the ticket online, and I only assisted a teeny bit. He’s been through this process before, and it caused a bit of stress when it came down to collecting the ticket at the theater. This time he printed the ticket at home, and there was a look of pride on his face when the paper spit out of the printer. This look of pride was only spoiled when I asked him how he was getting to the theater. He clearly hadn’t thought this through … or rather, he had thought this through, and assumed I would be willing to drive him. That’s what 18-year-old boys do, right? Well he assumed wrong, so off he went on a 45-minute bike journey. When he returned home, he quickly got ready for work, and left the house again. He was getting his hair cut before work, so he left much earlier than his regular departure time.

When he returned home from work, he walked into the living room wearing his bike helmet and a sheepish grin. I asked him as he walked past me on the way to the coat closet why he had that look on his face. After he put his helmet in the closet and poked his head around the corner, I immediately knew why. His gorgeous, to-die-for strawberry blond hair was gone, and in its place stood about a quarter-inch of prickly stubble! I wish I had a picture of the look on my face, because I can only imagine it to be quite humorous. Everything sort of slipped into slow motion as a hundred thoughts clicked through my head: Who is that grinning at me? Oh my gosh, he shaved his head! I can’t believe someone did that to him! I’m going to go there and complain! What a minute! It’s only hair it will grow back. And it looks … actually it looks pretty good. He looks grown up! Especially with that look of pride on his face.

Cameron made a decision, executed his decision, and was proud of the results. That made me completely proud of him. The next day, he decided to take his bike on the Metro so that he could get to a restaurant he had wanted to go to for lunch. From his lunch destination, he would ride his bike to a video arcade, and then take the Metro home. When he told me his plan, I was a little reluctant. After all, the thought of getting a bike down the escalators and on a crowded train causes my anxiety level to go up a notch or two. But that’s what 18-year-old boys do, right?

At dinner that evening, Cameron wasn’t just a part of the conversation, he was driving the conversation. He was downright chatty, telling us about his day unprompted, asking pertinent questions of others. Smiling. Chatty. Proud. I really and truly am the mother of an 18-year-old boy. Isn’t it great?

Hurray for having an 18-year old-son! At least that’s what I keep trying to tell myself. Even though Cameron is very different from many 18-year-olds, I am making a concerted effort to treat him like an 18- year-old … whenever feasible.

Last weekend was a prime example of my having to make a conscious decision to let Cameron be 18. Cameron went to see an R-rated movie, and it wasn’t rated R for violence or language, if you get my drift. But that’s what 18-year-old boys do, right? He purchased the ticket online, and I only assisted a teeny bit. He’s been through this process before, and it caused a bit of stress when it came down to collecting the ticket at the theatre. This time he printed the ticket at home, and there was a look of pride on his face when the paper spit out of the printer. This look of pride was only spoiled when I asked him how he was getting to the theatre. He clearly hadn’t thought this through … or rather, he had thought this through, and assumed I would be willing to drive him. That’s what 18-year-old boys do, right? Well he assumed wrong, so off he went on a 45-minute bike journey. When he returned home, he quickly got ready for work, and left the house again. He was getting his hair cut before work, so he left much earlier than his regular departure time.

When he returned home from work, he walked into the living room wearing his bike helmet and a sheepish grin. I asked him as he walked past me on the way to the coat closet why he had that look on his face. After he put his helmet in the closet and poked his head around the corner, I immediately knew why. His gorgeous, to-die-for strawberry blond hair was gone, and in its place stood about a quarter-inch of prickly stubble! I wish I had a picture of the look on my face, because I can only imagine it to be quite humorous. Everything sort of slipped into slow motion as a hundred thoughts clicked through my head: Who is that grinning at me? Oh my gosh, he shaved his head! I can’t believe someone did that to him! I’m going to go there and complain! What a minute! It’s only hair it will grow back. And it looks … actually it looks pretty good. He looks grown up! Especially with that look of pride on his face.

Cameron made a decision, executed his decision, and was proud of the results. That made me completely proud of him. The next day, he decided to take his bike on the Metro so that he could get to a restaurant he had wanted to go to for lunch. From his lunch destination, he would ride his bike to a video arcade, and then take the Metro home. When he told me his plan, I was a little reluctant. After all, the thought of getting a bike down the escalators and on a crowded train causes my anxiety level to go up a notch or two. But that’s what 18-year-old boys do, right?

At dinner that evening, Cameron wasn’t just a part of the conversation, he was driving the conversation. He was downright chatty, telling us about his day unprompted, asking pertinent questions of others. Smiling. Chatty. Proud. I really and truly am the mother of an 18-year-old boy. Isn’t it great?

Who here likes lunch? Anyone? Well, I have to admit I’m something of a lunch-a-holic. It’s one of those meals where, reliving my college years, I always looked forward to. Waking up at 11:30 a.m. every day, I would skip the cereal and sweet rolls most days and go straight for the lunch foods—homemade macaroni and cheese, chicken fingers, deli sandwiches, etc. Those were my go-to foods and I LOVED IT!

Now, that I’m getting into the whole full-time job rhythm though, I’m realizing how even more important lunch has become to me. Working an eight-hour day, I look EXTREMELY forward to those 30 minutes each day not only for my food love but also to relax and give myself time to unwind.

This realization day after day has made me want to explore just how huge this topic must be for the typical autistic adult in the workplace. If you are in a full-time job like me there can be a long list of variables involved with this process. If there was ever a toolkit made about this I think you would have the consider the following topic:

Never Skip Breakfast: This is the most important consideration. You never really know when a curveball can be thrown into your daily schedule so eating to put something in your stomach is key.

Time of Lunch: Is the time of your lunch consistent every single day? If not, does it throw you off your schedule to have to eat at different times? Scheduling will always be key here. Something that helps me is to write a to-do list every evening for the day ahead. Having that type of list handy always makes a huge difference in knowing how to address each day.

Of course, things will pop up during those days so it’s also important to be mindful of that by remembering to take short breaks during the work day in case you are feeling overwhelmed.

Inside/Outside Lunches: This is one of the harder areas I’ve seen with adults in general. Many people are very comfortable with just eating at the same place—usually in a lunchroom or at their desk every single day. But what about those times when that individual wants to venture out? What about at other times when a co-worker offers to take you out for lunch/buy lunch for the office?

One thing I’ve always enjoyed is using Google Maps to check out the area around me. I did this before I actually started my job. It was an important tool to help with processing everything from what cross streets were nearby and how I would get to work from the train to nearby places for lunch.

Asking People to Lunch: I’ve always found there are some dos and don’ts to this. For one, I think it’s absolutely important to network and reach out. At the same time though, it’s also important to do your homework when it comes to approaching people. The best thing to do is to bring a back-up lunch on the first couple of days and then to possibly ask your co-workers before you reach out to people in other departments. Initiating lunch invitations should be based on your comfort level in the situation while also making an effort to expand your work relationships.

An appropriate person to ask out to lunch will always be someone who you are on the same level with in terms of a job position. (For example, if you are both interns, working in a marketing department, working under the same boss, etc.) Once you make this first connection you can judge for yourself whether or not a similar approach with someone else may work as well.

All of these things considered, I really do think this topic should be addressed in lessons for adults with autism. It took me until now to really grasp the impact it can have on a day and why it should be discussed within our community.

“Oh, you’re so pretty, so pretty,” I cooed to Bootsie, our kitten. She chirped and purred in response. “You’re my beautiful kittenfish.” As I stroked our cat’s soft fur, I couldn’t help but smile. I’ve always wanted a cat, always wanted to say such overwrought things to a pet of my own. My husband watched us, and asked, curious, “What is with you and the ‘beautiful kittenfish?’ What’s that about?”

I wasn’t surprised at the question; I’ve wondered the same thing myself. The words came into my vocabulary spontaneously; I had no memory of where the phrase came from originally. “Well,” I said, digging through my mental archives, “All I know is that it’s something Willie says, so it probably comes from a video. Maybe ... Dr. Seuss? I think that’s right. And he always used to say it in a singsong voice, so I’m pretty sure it’s part of a longer song. We’ll have to ask him when he comes to visit next week.”

Fast-forward several days, and my family is gathered together around our dining table in Alabama. Their long-awaited visit is actually happening, and an air of festivity and gladness pervades the space. So far, Willie’s been cheerful and calm, with no evidence of agitation. He seems to be enjoying the visit in his own way. I’d been concerned that the travel and break in routine would be detrimental, but Willie seems just fine. I make efforts to draw him into our conversation now and then, but mostly, he’s content to keep to himself. He sits with us for meals, then takes off for some alone time. He plays his hand-held electronic word game or uses my computer to watch videos when he wants to take a break and retreat.

And when he sits on our couch, game in hand, Bootsie comes over to sniff his neck. She tiptoes tentatively behind his back on the cushions, unsure if it’s safe to come closer. Both parties are a bit fearful of the unknown other, yet intrigued as well. After a few more sniffs, the cat draws near. In turn, Willie takes the risk of reaching out to pet her, but his hand is too tentative for her taste; she spots it, and playfully bats him away. We can’t help but laugh as the cat skitters off, and Willie shakes out his hand.

Watching them together reminds me of my earlier question, and so, when my brother returns to the table, I say, “Willie, I’ve been wondering: What video does the ‘beautiful kittenfish’ come from?”

He responds immediately, as if it should be obvious to all: “Dr. Seuss’s ‘The Cat in the Hat!’”

“Oh, OK!” I say. “It’s a song, right? How does it go? Could you sing it?”

Without hesitating, he launches into his own rendition of, “Beautiful Kittenfish,” right there at the dinner table. I sit still, amazed by how sweet his voice sounds. He knows every word, and he sings them with gentleness and care. As it turns out, the song is a lullaby; I never knew. Later on, when I look up the original 1971 cartoon, I see that the Cat in the Hat sings the song in an attempt to lull his (very grumpy) pet kittenfish to sleep.

Perhaps it's simply an excellent imitation of the Cat in the Hat, but there is a tenderness in Willie’s voice I haven’t heard before. During the song, he isn't staring off into space; instead, he makes eye contact with me throughout the lullaby. And though everyone is listening, he focuses his attention on me. He is performing, to be sure, but what I experience is certainly not a rote memorization. The best way to describe it is to say that he puts his whole heart into every word.

My in-laws and I have known each other for over a dozen years—and some of those years were before I'd even heard of AS. They've put up with quite a bit from me.

Including when they've had me over for dinner. Mealtimes are perhaps the ultimate social occasion, and for an Aspie like me they provided lots of chances for me to upset others, before I learned a few little cues.

For one thing, my favorite form of stimming has been pacing. Back and forth.

Back and forth. Forth and back. Back and forth. Forth and back. Back and forth. Forth and back.

At dinner, as soon as I was done I used to just get up and start pacing around even before anyone else was done:

Mother-in-law: “So, congratulations, Emily, on winning that award! Jeff, would you like more lasagna? By the way, how's that business website of yours coming along Jeff?”

Me: “Oh no, I'm stuffed. Thanks though!” I push back from the table, get up, and start pacing.

Breaking family dinner down to its basic components: It's a table, with a bunch of people sitting around it who might or might not be related, and there's food. So why not leave as soon as you're finished eating? (Yes, people sometimes talked around the dinner table. So what? People can talk anywhere, right?) I had it all figured out, logically ... just like since a tomato is classified as a fruit, it should go into fruit salad. This is the textbook case of “outsmarting yourself.”

I've sometimes tended to just ask myself: “What's logical?” instead of “What's socially accepted?” or “What would please (or tick off) everyone else?” Not so much because I've made that conscious choice (though there's that element too), but also because sometimes logic is the only thing that occurred to me. The socially accepted thing, and the emotionally (un)welcome thing, often are never written down or even spoken, so sometimes the logical thing was the only guide I had.

Not that that made everyone else feel much better.

I've got Emily to thank for pushing me on this one. Not only did she force me to learn about AS in the first place, but also she made me understand that certain behaviors were simply appropriate and others simply not appropriate, at least around their family dinner table.

And now, after a bit more practice (and quite a bit of patience on everyone's part), it's more like:

Mother-in-law: “Emily, congratulations on winning that incentive award at work! Jeff, would you like some more lamb?”

Father-in-law: “By the way, Jeff, how's it going with that course you're teaching?”

Me: “Thank you, but after having seconds already I'm stuffed. Great lamb, my compliments to the chef! The course is going pretty well. Midterms are coming up and I'll need to grade them over the weekend so the students will get them back in time to decide by deadline if they want to withdraw. Of course, I can't say anything about individual cases, but I'm pretty sure a few will want to at least consider withdrawing to save their GPAs. By the way, I remember you mentioned that reorganization project in your office ... how's that coming along?”

Emily (at home, a couple of hours later): “Jeff, they really liked having you over and hope they can see you again soon. That makes me feel good, too!”

So, whether you're an Aspie or autist trying to get and keep more friends, or a parent who wants the same for your Aspie or autistic son or daughter, keep in mind:

Pleasing others can be an upward spiral ... for example, if you make your girlfriend's or wife's parents happy, you often make her happier too. And if you make more friends, they can introduce you to their friends too.

People actually like to talk at the dinner table as well as eat. So, if everyone else is still at the table talking, stay yourself and join in the conversation as much as you can ... at least when asked to talk.

Compliment the food whenever possible. When people cook, they take pride in their food and if you show you like it, that implies you like them and it helps them like you too.

When conversing, don't just answer. Ask a question or two, because it shows interest in the other person. Bonus points if you can ask about what they told you previously, because it shows you're listening.

They danced like no one was watching. With abandon. And exuberance. And energy. And joy. They jumped in unison, put their hands in the air, sang along to the pop music that defines their generation. Like young college students everywhere on the planet. And there was my son in the middle of it all, on the dance floor, celebrating youth with his peers.

It was the New York Institute of Technology's Vocational Independence Program annual alumni/parents/students dinner dance at the Sheraton Long Island last Saturday night. It started at 7:30, and by 10:00, due to some unseen kitchen glitches, dinner still had not been served. Parents and faculty were long past restless, bordering on cranky. The kids didn't care.

From the beginning they crowded the dance floor. The DJ kept asking them to take their seats so the servers could take their dinner orders. Some did, briefly, but couldn't stay seated long. Another of their favorite songs was playing and they jumped up, grabbed their friends and ran back to dance some more. Some couldn’t take the crush of bodies in the center, but boogied on the edges just as happily.

How many of these young people, I wondered, had experienced rejection, bullying even, in their young lives? How many had lived life on the periphery in their high school years? And here they were, dressed to the nines, some of the boys with precariously tied ties, girls in heels they had to kick off to dance, reveling in friendship and music and movement. Or, as my husband observed, "looking like every rural Iowa high school dance I ever went to in the 1970s." Only these kids were less self-conscious.

Dinner came, at last. They ate quickly, and rushed back to the dance floor. Reilly, who would normally be a reluctant dancer, was held captive on the floor by his cute, petite girlfriend, Ashley. Grinning from ear to ear. He was wearing gray dress pants fresh from the dry cleaner, a sage green buttoned-down shirt and a blue and green tie (expertly tied by Olivia, one of the sophomore girls). He looked handsome and, even more amazingly, comfortable in grown-up clothes. He's doing better with his razor. He smelled good. (We won't talk about the state of his dorm room, or the fact that his toothbrush was mysteriously located still in the suitcase he brought back from spring break two weeks ago.)

Dessert was announced and the dance floor emptied. Apparently, Reilly is not alone in his love of chocolate cake. But it didn’t stay empty for long, and soon the music was pulsing, colored lights were flashing, kids were moving. Adults were heading to the door, but the students were going strong. We tracked Reilly down in the middle of the action again to say good night. He would take the bus back to the dorm, while his Dad and I stayed at the hotel. He wouldn’t let us leave, though, until he had introduced us to each of the teachers who were still in the ballroom. They all told us how much they enjoy our son, how well he's doing, how far he's come, how funny he is.

Are you sick of hearing about Facebook chief operating officer, Sheryl Sandberg, and her "Lean In"movement yet? Yeah, me too. But … has anyone besides me stopped to ponder how the COO of a company whose stock price is far below expectations has had time to write a book? And go on a nationwide tour promoting this book? And be home in time for dinner with her children? If I had to guess, I’d say Ms. Sandberg has a lot of people she’s been leaning on while she’s been leaning in. This concept of having someone to lean on has led me to consider my own decisions with regards to balancing my career and my family life.

The issue of balancing career and family has been in the news quite a bit lately, starting with a pregnant Marissa Mayer becoming CEO at Yahoo, continuing straight on through Sandberg’s book release. There seems to be this emerging pressure for us to “solve” these balance issues as a society and find perfect harmony in our lives. Well, good luck with that. Parents of children with autism spectrum disorder are all too familiar with balance issues, only instead of merely balancing career and family, it becomes a matter of balancing career, family and autism. And if you try lean in to any one of those components too far, you’re likely to end up flat on your face. In order to have any hope at a successful balancing act, you not only have to have people you can lean on, but you must be someone others can lean on as well.

Throughout my personal experience, there have been times when I have leaned into my career, times when my family was my priority, and yes, times when autism took the front seat. When I started my career just out of college, I was all about leaning in and making the most of working in the fast-changing IT field. Before long I was married, and held the title of primary income provider. I was a young woman, earning more than my husband, and never felt held back by my gender, or anything else for that matter. It wasn’t too much longer when Cameron came along. I took six whole weeks of maternity leave, (three of them unpaid) and returned to work slightly conflicted, but did what I had to do. Soon I found myself the single parent of a toddler with newly-diagnosed learning disabilities. My career, whose ranking in priorities had been slipping since Cameron’s birth, became even less of a priority. I made the decision to become a mother that my son could lean on and leaned out of the workforce. I created a situation in which I could work part time and still get by. I sold vested stock options, I cut back on everything, and did what I had to do to make it work. I eventually remarried and things with Cameron became more automatic. There have since been opportunities for me to lean back in to the workforce, but instead I have leaned in to my family, and been a support they could all lean on. It may be a rub against the feminist doctrine, but I’m happy with the life decisions I’ve made, and refuse to feel guilty about my title of “stay-at-home mom.”

As far as balance goes, it all comes down to setting personal priorities and making decisions that support those priorities. Asking society as a whole to solve these uniquely individual issues is not the answer. But if we as individuals find our own solutions for achieving the perfect balance, society will begin to adjust to those solutions, and more and more solutions will begin to emerge. And hopefully, one day, a mom who homeschooled her autistic son because there were no other viable options will be revered by society just as much as a woman with multiple degrees from Harvard and a Silicon Valley pedigree.

Bill and I love Cody immensely. And so much of the time we feel as though we should not exclude Cody from any part of our lives. We enjoy having him with us wherever we go. We even miss him when he’s gone with other family members. But we have let those feelings override our need to spend time together as a husband and wife should.

I’m talking about things as simple as just the two of us going out to dinner. Even when Cody spends the night with his grandparents, we have neglected to see that as an opportunity to sit on the sofa and spend time talking or just going out for ice cream at the local drive-in. When we get up in the mornings we may exchange conversation but we often wait for Cody to get up so we can spend time together as a family when we could have been sharing a cup of coffee on the patio together as a couple.

If others were to be able to see how an average day goes in our household, they may be led to believe that Bill and I were more like brother and sister who share a responsibility in Cody’s care instead of husband and wife who love our son dearly, but who also share a deep love for each other as well. In reality, this isn’t the case at all. Bill and I actually love each other very much.

Bill and I have talked and we both agree this is something that we need to address. But we’re going to have to get a little more creative about it. For us, it’s not as simple as calling up the girl next door to see if she is free to babysit Friday night. First of all, when you live in a rural area your next-door neighbor may live a good distance away from you. Just like you, they often have jobs outside their farms and lead very busy lives; maybe you have had a chance to get to know them and maybe you haven’t. But even if you’re like me and have siblings close by, circumstances still may not be right. I trust that my brother and sister both would do their very best to care for Cody and make him feel safe and loved. But they too have busy lives and their availability is limited. And neither of them has spent a great deal of time around Cody and wouldn’t know how to interpret a lot of what he says, his moods and what his actual needs might be.

There are respite services available. Some are in the form of daycare, which we are not in the market for. There are also respite caregivers who would be available to come to our home to stay with Cody for a few hours so we could have some time to ourselves. While we have always depended upon family members thus far for those rare nights out, we will be investigating candidates from those providers, as well as whether or not we can fit such services into our budget.

In the meantime, it is ultimately up to Bill and me to make time for us to be alone. First, we have to get past the feeling of guilt we have when we don’t include Cody in every minute of our day. It’s an easy trap to fall into for all parents who love their children regardless of whether they are neurotypical children or children with special needs. But an appropriate time for parents to be alone together without their children should not be looked upon as a selfish desire, it is needed and it will help parents to be better parents.

Alone time does not always require an outside caregiver. A little planning can go a long way. Some of my ideas include planning a night to make a cheese and sausage platter and have a bottle of wine we can share by the fire after Cody goes to bed. I would be happy having a dinner for two by candlelight out on the patio underneath the stars. And on those occasions when Code does go to his grandparents for a weekend, I’ll be happy to pack a picnic lunch and just go sightseeing for a day. Because sometimes parents need a “time-out”!

Since April is Autism Awareness Month, I’ve been asking myself: How can we, as siblings, show support and raise awareness of autism in our communities? And not just in April, but throughout the year? With this in mind, I’ve compiled a few suggestions that can keep siblings active as advocates year-round. Consider it a calendar of sibling support!

January

Attend a statewide budget hearing and speak out for your sibling, and others with special needs. If you can’t attend and speak in person, write a letter to your representative, asking that they vote in favor of measures that provide support and protect equality for individuals on the spectrum. For more on current issues and legislation, visit the Autism Speaks Advocacy page, or the Arc of the United States’ Action Center.

February

Send a Valentine to your sib, telling them what you love best about being their brother or sister. In the process, remember to look for love in the ordinary spaces of your days. You might also read stories from fellow sibs, and see how they’ve found beauty in difficult times.

March

In preparation for tax time, check in with your parents or guardians and ensure that all relevant guardianship, special needs trust, and living will documents are in order. If your parents haven’t yet done so, encourage them to explore public funding sources for your sibling’s care, and thereby ensure that your sib is receiving appropriate benefits. This is a vital—and often-overlooked—aspect of caring for our siblings.

April

Celebrate Autism Awareness Month (and National Siblings Day) by connecting with other sibs. Check out The Sibling Leadership Network to learn more about supporting your sib throughout their life, connect with your state chapter, explore resources, and more.

May

Honor my brother Willie; his birthday is in May! (OK, maybe this isn’t something everyone celebrates … but it is a big deal in our family.) Mark your sibling’s birthday with songs, gifts, and merry-making; let them know how much they mean to you.

June

If possible, plan to attend your siblings’ IEP meeting, in whatever month it takes place. If you’re not geographically proximate, you can still contribute; you could volunteer to assist your sib in a goal. For example, if your sib has a connections goal, you can commit to talking with them on the phone once a week.

July

Consider attending an autism conference to learn and engage with the community. For example, the Autism Society’s 44th Annual Conferencewill take place in Pittsburgh, PA. If you attend, you’ll have a chance to connect with professionals, researchers, and advocates, as well as several members of the AA16 team. Kerry Magro will be presenting a session entitled, “Defining Autism: From Nonverbal To National Speaker,” and I’ll be presenting, “Challenges and Joys Of Being a Sibling (and How You Can Help).” We’d love to see you there!

August

Use this time to help your sib follow up on health care concerns. Health and wellness is a year-round priority, but if you’re in a caregiving role, make sure that your sib has appropriate insurance, and that doctor’s visits are scheduled as needed. (This is also a good time to review the condition of their medical and adaptive equipment.)

September

September may mean back to school; if so, send a note of encouragement to your sib as they begin another year. You might also investigate postsecondary options for your sib.

October

Halloween is here; it’s time to get goofy! Scan a picture of the two of you when you were young and dressed up as fairy princesses and dragons. Share a laugh together.

November

Give thanks for your sibling, and consider donating to an autism-focused organization. For example, if you’re passionate about employment, make a donation to a non-profit or small business that is committed to creating engaging, community-based workplaces for young adults with autism. For example, this past year I purchased holiday gifts from organizations that employ adults with special needs. Furthermore, I told recipients about the organizations, and why I feel strongly about supporting them.

December

Take a break, rest, and enjoy the holiday season with your sib. Your presence is the greatest gift you can give.

In my last column, I said I was preparing to give a speech at a meeting of a local special education group about my life with autism in order to advocate for other people with autism and other special needs in my community. I have since begun gathering my thoughts, and I am working toward making the best 20-minute speech that I can. I feel incredibly nervous about this because this is the first time I will be speaking at considerable length about my personal life in front of an audience. For me, this isn’t the same thing as writing about my life for this column or for my blog; what I write here is basically small snapshots of specific parts of my life. I am going to have to address a large portion of my life and experiences in one speech, and while I have a rough outline of how I want to organize the material, doing so is a bit intimidating for me. I read something recently, though, which has caused me to think of this project in a new light. I now think this is a chance for me to learn how to not just advocate for others but to advocate for myself as well, an endeavor which has largely been taken up by my parents my whole life.

I logged on to the Autism After 16 website not too long ago, and I came across a columnwritten by the mother of a child with Asperger’s Syndrome almost a year ago. I found myself focusing intently on the section where she wrote about her son taking on more college classes than he probably should have. She surmised that if he had mentioned his condition to his advisor, he could have arranged for a more accommodating number of classes and would not have become potentially overburdened. She said that her son was afraid of what people would think of him if they knew he had Asperger’s.

As I read this, I remembered that when I went with my mother to see an advisor about scheduling my upcoming college classes, my mother was the one who mentioned my autism and helped me to figure out what classes might best serve me and my interests. In fact, there have been many instances when my parents have represented me in discussions because my autism would have made doing my own negotiations difficult. With them on my side, my concerns and needs were properly addressed so I could get the opportunities and resources I needed to excel. After reading the article, I now recognize, however, that I will need to represent myself when I “leave the nest” and see to my own affairs more independently. The student in the column I read had not self-advocated on his own behalf which produced less desirable results. I am at a point in my life where I need to learn how to self-advocate for my own benefit, and with my parents’ help, I know I will succeed in finding my own style of personal advocacy. I have learned how to do a lot of things on my own. The content for this column, my blog, and the other material I have written professionally along with the many life skills that I have mastered are proof of that. Although I have learned to do all these things and more, I see now that the speech I will deliver at the special education group meeting will be one of the most important things I will have ever done for myself and others on my own. It will be the culmination of a whole life of others standing up for me.

“Do you think you’ll make it home in time for Madison’s birthday party?” I asked. A college freshman attending school 3000 miles away from home, Madison’s brother is 16 months younger.

Madison was turning 21.

“Hope so, Mom, if all the connections go smoothly,” he said. “So, how exactly are we celebrating?”

“No booze, buddy,” I teased him. “But we will have a red velvet ice cream cake. And of course, Madison’s favorite, pizza. “

I could hear him smile on the phone.

“Sounds good, Mom. See you soon.”

“Text me when you land.” And he promised he would.

Meanwhile, I set the table and put the “You are Special Today” plate at Madison’s place. I pulled out the “2” and “1” candles, gathered her presents, and figured out how long I needed to thaw the cake before we could cut it.

Madison’s older sister and her husband confirmed their attendance, as did Madison’s youngest brother. Caregivers were in place to pick up Madison from her respite weekend camp and bring her home for the party.

We were ready to make some memories.

Hours later, the siblings arrived on time and helped me finish putting the food out.

Okay, I’ll admit it. I sometimes have a tendency to forget that “disability” and “autism” are not synonymous. I especially need to remind myself of that fact when it comes to sniffing out postsecondary options for Cameron. I recently attended yet another information session on yet another program for students with disabilities. This particular program was a four-week summer session designed to prepare students with disabilities for college. See? There’s another word with a meaning I have a tendency to forget: “college” and “postsecondary education” are not the same. When I signed up to attend a session on a program on "College Preparation for Students With Disabilities,” a specific type of "student" and a certain type of "college" came to mind. But as I sat in this session, the definitions of "disability" and "college" started coming back to me.

As usual, the information imparted at this session stirred my soul. I suppose when you have no idea what the future holds, everything sounds like a good idea. But teaching prospective college students study skills, using a drama course to teach self-advocacy, and practicing reading college-level texts for comprehension seem like great things for a student with disabilities to learn. At least some students with some disabilities … Sitting in the familiar setting of my son's school, among parents I know and among students whose learning profiles are familiar to me, the vastness of the term "disability" became apparent. When a fellow parent asked the question that was on my mind: "What if a student has no hopes of being able to comprehend college-level text?" and the facilitator responded, "Well, she'll have to read college level text in college!" I began to realize the presenter didn't know her audience. We were a group very familiar with language-based learning disabilities and high-functioning autism. When we hear "disability" that's what we think. There was a bit of a mismatch of definition in the room. Most of us in the audience didn't aspire for our students to take credit courses in college. We were looking for continuing educational opportunities beyond high school. And preparation for what lies ahead sounds like a good way to spend the summer. Little did we know that this program was aimed at preparing them for something that was likely out of reach for most of us.

Cameron seemingly not having the appropriate disability for this program wasn't the only thing that bothered me. There was discussion about the need for participants to stay for the entire session each day due to the disruption caused when students leave early. A student who leaves early apparently requires a staff member escort to the pick-up zone, and is very disruptive indeed. Excuse me? Students aged 16 to 21 that are being prepared for "college" cannot walk out of a building unescorted? This struck me as a little counterintuitive. I'm not aware of any college's Department of Disability Services offering "adult supervision to and from the carpool line" as a reasonable accommodation.

So this wouldn't be a program suitable for Cameron. But I wouldn't consider the evening spent learning about an unsuitable program a total loss. I have now had a reminder of the fact that disability doesn't just mean autism. And not all college programs for students with disabilities are suitable for students with autism. Just as not all college programs for students with autism will be suitable for Cameron. I'll keep looking. I've got about 18 months to find something. It may well take that long to find a keeper.

It was about a week into my job at Autism Speaks when I realized how much you have to enjoy your work to do a full-time job. I am one of the lucky ones. To find an organization I love in a field that helps maximize my interests is something I’m extremely grateful for. This has made the days seem to fly by. While getting work done I usually have the biggest smile on my face.

This made me ask myself a question though on what others on the spectrum believe about full-time jobs. Three major challenges for me as regards a full-time job are related to interests, communication and burnout. I wanted to discuss what these three challenges mean in more depth from my experiences.

Interests

Forty-plus hours a week at a job is a huge chunk of many people’s lives, so being happy—or at least content—with doing what you are doing seems to be really crucial. For an individual on the spectrum who has key interests in only a few areas, it makes finding your specific job especially important. In addition, making compromises can be difficult for someone with ASD. Even if you are at the right job for you, if it isn’t exactly what you want you might turn yourself off from the job altogether. The “connect” has to be there.

Communication

Another challenge with most full-time jobs is collaboration. Even in many positions where you are working on more individual projects, you still have a supervisor who you have to report to. If you have several of these projects and there isn’t an inherent time-line for getting them done, a person with ASD may have issues as sorting through and sequencing which should be done first. In addition, making necessary transitions between tasks and projects can be tough. If you are working in a team environment you might need to compromise which often takes understanding from other team members and from you. This is hard at times because some individuals on the spectrum have “tunnel vision” or the inability to put themselves in the shoes of someone other than themselves.

Burnout

Finally, another challenge can be burnout. For me, I had to do a lot of work as a kid when it came to therapy to get to where I am today. This has made me feel like I have a few more miles on me even though I’m a rather young adult. Because of the work I did as a kid, it has made it an easier transition to the job world because I’m more aware of how to take on commitments. I always had a schedule, another therapy session appointment to make, another task or goal to achieve. Committing to activities when you are younger I think is a necessity today for kids to develop.

Preparing for the Future

I think these challenges need to be considered for adults on the spectrum and we need to start focusing on addressing these in early childhood. Teaching and learning job readiness skills is essential if there is to be a job for those of us on the spectrum. While I am focused on employment in the traditional workplace, I’m thankful on the other hand there are self-advocates out there who are not doing the full-time job route. Some of these individuals have decided to create their own businesses, do consulting, speaking, tutoring, etc. They have found jobs where they have a certain amount of flexibility to what they are doing. It’s important to consider what type of employment model fits you best. And, the more trial and error you do the better off you’ll be. This has always been my mantra and I’d absolutely encourage you to make it yours as well.

My parents and brother are coming to visit me and my husband here in Alabama next week, and we can’t wait to welcome them. I’ve been counting down the days on my calendar, and I know that Willie has been, too. (In fact, whenever I look at my calendar, I can practically hear him saying, “In one more week, we go to visit Caroline and Jonathan in Alabama!”) Ostensibly, they’re coming to celebrate my mother’s birthday and visit our new home for the first time. However, they are also arriving at the start of Autism Awareness Month. And the fact that their visit falls right between World Autism Awareness Day(April 2) and National Siblings Day (April 10) … well, the timing is ideal, if you ask me. It’s been too long since we’ve seen one another, and I’ve felt the separation more acutely since I began serving as a volunteer member of the Sibling Leadership Network’scommunications committee. The writing and preparation I’ve done for them has me missing my brother, and I can’t wait to spend time with him.

Of course, the usual questions run through my thoughts: Will Willie be able to adapt to the travel, the change in routine? Will he have another meltdown on the flight? Will he struggle with being in a new place, or will he be able to enjoy it? But what I’ve learned in being Willie’s sister and in serving as a caregiver for adults with intellectual and developmental disabilities is this: One of the best gifts I can give another person is a firm faith in their capabilities. It is all too easy for caregivers and family members to get stuck in a mindset that says, “We can’t do that outing/trip/celebration. He/she will never be able to handle it.” On some days, that may well be true, but if we are to support and equip our loved ones on the spectrum, we need to constantly check in and reassess such statements. What was the case yesterday may not be the case today.

As anolder sister, I do feel protective of Willie, but I can’t let that get in the way of him having the dignity of risk. And even as I acknowledge the areas where he needs support now, I’m determined not to set limits on what he is able to do for himself. After all, if he’s never put in a position that challenges him, how will he learn and grow? Self-control is a muscle he’s building; he still has difficulty managing his behavior at times, but he is learning.

And as the visit approaches, it helps to know that Willie has participated in planning the itinerary. Our parents asked him about his travel preferences, saying, “Do you want to have a shorter flight and a longer drive, or a longer flight and a shorter drive?” He apparently responded right away, with a decisive tone with “A shorter flight!” So that’s the plan. In turn, I’ve been doing some preparation of my own, mainly in the form of letting go of expectations. I remind myself that the visit doesn’t have to go “perfectly,” that Willie’s behavior will probably get difficult at least once, and that it will be all right even so.

It’s wonderful to feel the anticipation, to know that I’m looking forward to seeing my brother. This may sound simplistic, but it’s a hard-won truth. There was a time when I looked at Willie and felt only fear. There was a time when I felt that I had to get away from him, from the havoc wrought by his aggressive and self-injurious behavior. But now, all I want is to welcome him here, to the old house that is our new home. And I think that’s the reason why I’ve had these particular song lyrics (from Phillip Phillips’ song, “Home”) running through my mind this week:

Settle down, it'll all be clear/ Don't pay no mind to the demons/ They fill you with fear

The trouble it might drag you down/ If you get lost, you can always be found

Just know you're not alone/ Cause I'm gonna make this place your home.

As I mentioned in a previous column, my son is headed off to college this fall. “This fall” is now imminent; we can count down by days rather than months the time left before he is off on this next phase of his development. At the same time, I am faced with a new class of senior students, for whom the upcoming school year will be our “last chance” to impart upon them the knowledge and skills regarding what it will take to have the best chance of success in the adult world.

In looking at what last-minute words of parental wisdom I want to convey to my son, I am coming across some overlaps between these words and the words of educator wisdom I want to convey to my students this year. It’s like one big Venn diagram in my head, so to speak. For example, the first, biggest, and most obvious—yet at times most easily overlooked—issue is self-advocacy. This is a coin with two sides and all sorts of nooks and crannies in between. On the one side of the coin we have the issue of standing up for oneself and knowing when and how to effectively self-advocate.

When my son was registering for his first semester classes, he came home with a schedule that appears more than a bit on the intense side, especially when one takes into account the fact that he plans to audition for his college’s marching band. His intention had been to take four classes his first semester, which seemed reasonable given the plans he has for extracurricular activities and factoring in a semester’s worth of Advanced Placement credits in his favor. So after meeting with an advisor, he is scheduled for more credits than I took in any one semester in college. And that doesn't even include the potential for marching band time constraints. When I asked him about this, he explained that he felt as though the advisor was “forcing” him into taking a certain number of classes. So I had to ask: Did you disclose your developmental history, son? In other words, did you tell him about your Asperger’s? Did you tell him that you had a plan in place that would allow you a little bit of breathing room as you make the adjustment to living in a dorm hundreds of miles from home and taking college-level classes and meeting all new people and possibly participating in a top-notch band and so on and so forth. No, he did not disclose his disability, nor has he even been willing to entertain the notion of registering with the school’s disability services office. He will sink or swim on his own merits as far as he is concerned. Not to be a “smother mother,” but I feel this is a mistake on any number of levels and one which I am powerless to control. I cannot make him self-advocate. The stigma is still out there, after all, as much as we would like to believe it is diminishing. My son is an incredibly brave, intelligent young man and he is scared to death of what people who are just meeting him will think of him if they know that part of what makes him brave and intelligent falls under the spectrum of autism.

The mirror image of this conundrum can be found in one of my senior students, whose reluctance to acknowledge his disability and its practical implications is calling into question his ability to succeed in the adult world in less than a year. In his quest to appear “normal” he has placed certain restrictions on what he will and will not do in his transition preparations, and the parameters he has set forth are doing little more than hindering his chances to make that transition a smooth one. Like my son, he is incredibly self-conscious that others will judge him based on that word, Autism, and all the prejudices that come with it. So once again I am powerless, which for a closet control-freak like me is a terribly stressful place to be!

So can any words of wisdom come from this? What do I tell these young men, and the others like them, other than what it took me over 40 years to learn for myself and hope they will not be content to wait that long for the message to sink in? I will tell them this: The best strengths you will find within may very well come from “the A-word” and you’ll never know for sure unless you embrace that which goes to the heart of who you are. Good luck, gentleman—I am pulling for you!

We're winding down Reilly's spring break as I write. It's been a good week. I haven't accomplished much except to attend to his social and laundry needs. But this week, and recent events, have given me reason to hope for the future.

I picked Reilly up at the airport on Friday afternoon, and he was bubbling over with plans for the week. Several of his high school friends were also on break from programs similar to Reilly's, and he was anxious to see them. The moms were anxious to catch up, as well. We wanted to compare notes: How is Matthew doing at Riverview? How is Alex doing at the College Internship Program? How is Reilly doing at NYIT? And how is Demba doing at the community college?

Immediately, there were plans to go to the movies, and have sleepovers, and visit their high school to see favorite teachers and friends still there. Arghhh. Lots of driving, I thought to myself. But, it's only a week, I reasoned with myself. And, luckily, Matthew's wonderful step-father volunteered to do much of the chauffering.

As it turned out, Reilly could have used a social secretary, as he double-booked himself more than once. Of course, if he had included me in the planning a bit more, I might have headed off some of the scheduling problems. But, in the end, it all worked out. He accomplished everything on his agenda, even hosting a friend from NYIT for a couple of days.

My chats with Reilly, his friends and their mothers are helping me see growth and hopeful glimmers of future. All the boys are making progress, though certainly challenges remain. They are enjoying classes that are, for the most part, useful. They're learning, albeit slowly, to be independent. They're getting some job skills. Alex is learning to cook. Demba is learning public transportation. Matthew was finally able to move into the dorm. Reilly got himself a summer job! He set his sights on a front desk position at our community pool, downloaded the application, filled it out and emailed it to the manager, following up to make sure it was received. He came home for break with the news that he got the job. Shortly before spring break, I got an email from school saying a new independent living counselor had been hired and he's working with Reilly on grooming issues (yaaaaay!).

A new, or budding, confidence is visible in each of the boys. At dinner last night, Reilly told us he's proud of himself for being able to do “college.” The moms and I agree; we feel lucky to have the means to send our boys to these programs. But what of others less fortunate? And will the programs lead to useful jobs and lives of purpose for our sons? We don't know yet, but for now, it's OK. A couple of years ago, we couldn't have pictured our boys where they are now.

I am now officially the parent of an adult child. Cameron has reached the age of majority. And how are we celebrating? Like any star athlete would after winning the championship: We're going to Disney World. (The lack of exclamation mark was not an editorial mistake.) As a matter of fact, as you're reading this, there's a very good chance that Cameron and I are standing in line. And when you finish reading this, we'll be standing in line. And when you come back in a few hours to read this compelling column aloud over the phone to your BFF, we'll be standing in line.

Last week I had lunch with a group of moms from Cameron's school. We were all discussing our Spring Break plans. When my Disney trip came up I received some interesting advice. It wasn't about where to stay or what attractions to hit before the crowds get too bad. The advice was to get a letter from Cameron's doctor stating that he has autism and could not tolerate standing in line, and then take the letter to guest services at Disney. We would be issued a pass to go to the head of all the lines without question. Hmmm ...

I went home and did some online research to find out exactly what documentation I needed in order to be granted this magic pass to the Magic Kingdom. As I was reading firsthand accounts of the accommodations that theme parks offer guests with disabilities, that sound of the needle being ripped from the record went off in my head. Wait a minute! Who has the frustration tolerance issue with waiting in lines? Is it Cameron ... or is it me? Cameron has been to Disney World before and he managed just fine waiting in line with the rest of the guests, thank you very much. Why would I want to take advantage of a company's good will towards guests with disabilities by fudging on what Cameron needs? I know there are plenty of guests that truly need the accommodations offered, but Cameron isn't one of them. I'll stand in the humid, sticky Florida sun with the masses of humanity and see which gets more attention: the growing mound of frizzy hair on my head or the chirping noises and flapping from Cameron.

So, thank you to Disney and other companies that make these accommodations for guests who need them. Policies like this enable families to have dream vacations that would otherwise be a nightmare. I am happy that my family does not need your gracious accommodations. And I promise I will never, ever roll my eyes when someone is escorted to the front of the line. Now, my eyes might roll a smidge if someone in that guest's party is sporting an inappropriate garment, carefully selected to display an inappropriate tattoo. We all have our frustration tolerance issues we need to work on. Luckily Cameron does not need special accommodation to deal with his. As far as my own go, I will work on turning the eye roll into a discreet attempt to avert my eyes.

These days autism appears to be the disorder du jour and headlines about the newest autism breakthroughs are everywhere. Sometimes filled with jargon or unfamiliar references,...

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